futurehope

My opinion is that the above sentence is the outcome he wanted in the first place. He wanted to get rid of you as his patient because he doesn't know what to do. So he gave you a suggestion that is so "way out there" that he knows you won't comply and you'll "fire" him. It may be easier than saying, "I can't help you anymore." When a relationship between two people is going poorly, sometimes an uninterested party finds it easier to "act poorly" than to come right out and say "the relationship is over". By acting poorly, they hope the other party dumps them. I think your doctor wanted you to dump him (or her). How's that for a theory?

Bqsu4, I feel blessed having a response from you (an exercise physiologist). It sounds from your response and from others on this forum that exercising with a bicycle really does help us with our symptoms. And I'm willing to try but I didn't know if I should go the route of the actual recumbant bike as it takes up much room which I don't really have, but.... if it could help me, I'll buy it and do it. Right now, I'm doing thigh and leg exercises using leg weights with an exercise routine I read on this forum. I didn't know if I was doing enough. Bicycle riding has been mentioned many times. Obviously, there is an aerobic component to using a bicycle that using weights (the way I do them) doesn't have. But I do aerobic activity by walking 3 times a week or more for 35 minutes, so, I'll think more about whether to invest the money and space in an exercise bike. Decisions?! Decisions?!

Lois, I'll be calling into my neuro for results this coming week. As for what I intend to do about it if I have a low blood volume problem...... Well, from reading this forum, I remember three options: taking licorice extract having IV saline available to me getting Procrit injections I tend to lean towards doing the easiest thing, so I'll let you know what the results are and what I decide to do if I have a problem.

I just had my blood volume checked (using a DAXOR BVA-100 machine) at Washington Hospital Center in Washington D.C. The website for this test: http://www.daxor.com/bva100_howitcompares.html I do not know how you can find where it's done near you, but maybe the website will help with that. Good luck!

Kel, I'm surprised you can take the Remeron. I was on that for sleep as well, but looking back on it, I think the Remeron actually made the POTS worse, or made it more obvious, or "brought it on". I actually started using a cane to steady myself when upright while I was on this medication. I'm not so sure this is a good med for POTS people. But, I do not know how long you've been on it and I'm no doctor and cannot tell you what to do. But, I know you must sleep, so, what to do ???????

I do not know if this could be passed on or not. I just have a suggestion. Listen to your daughter and take seriously what she is saying to you. I say this because I spent my entire childhood with a mother that did not take my symptoms seriously. The result was, I would hide what I was feeling because no one believed me or they labelled me a hypochondriac. I do not want another child to go through what I did.

A medical writer? Just "what the doctor ordered". Thanks.

Thanks, Ithomas, especially for your explanation which I understood a lot better than the extract?! Maybe when the full article comes out regarding hypermethylation of the gene affecting NET in POTS patients, you can "translate" for us. Are you in the medical field by any chance?

Hi Miriam, I'm glad everything went well in caring for your grandsons. Is your son at Ft. Lewis by any chance? I'm asking because my daughter and son-in-law live there but they're shipping out to Germany in Sepember.

Hi, Dionna, I feel a bit awkward discussing how I eat because I know everybody is different and has different ideas and health needs, but..... you asked, so I'll tell. Concerning tuna salad, or salmon salad: Sometimes I use a bit of my yummy "health food" mayonnaise, Hain's safflower mayonnaise in the tuna. Sometimes my husband adds cut up celery to make his tuna salad. Sometimes I eat tuna or salmon with nothing but bites of bread. I use the fresh baked bread that my grocer makes each day (without the preservatives). It's not an exaggeration to say it took me years to realize there is food out there that is all right. I'll describe "good foods" in a minute. Concerning what are foods with nitrates? First off, foods with additives and nitrates include hotdogs, bologna, salame, sausages, any prepared meat or prepared foods, frozen meals, etc. So, to get back to what is good. If you can eat a food that is natural and more like it occurs in nature before man gets his hand on it, the better off you'll be. What does that include? vegetables, chicken, porkchops, hamburger (from which you can make hamburgers, tacos), stews, (I'm trying to remember what we' ve eaten for dinner recently),we had this yummy baby-leaf spinach that came prepackaged for a salad and my husband steamed it (boy, was that ever tasty), corn on the cob, broccoli, potatoes, sweet potatoes, anything that is natural really. If you can do milk, there is skim milk or string cheese you can eat for a snack. There's yogurt. I also use this "health food butter" called "Earth Balance" or "Smart balance" or something like that. Yes, I eat shellfish once in a while. My husband just made this yummy dish with muscles on top of spaghetti with this yummy sauce. Sorry, I don't know details. Anyhow, if you look in the grocery store to see what foods are more natural, that's what I eat. I'm sure I left off many other foods. And like I said before, I stick with dry cereals that have less than 35 mg of carbs/serving. In the winter, I might have oatmeal or rice cereal or whatever with fruit in it (like raisins). I hope that helps. Like I said, if you eat milk products, you have more choices. I'm telling you stuff that took me years to figure out. I was a real junk-food junkie and I was big on prepared foods, so I had the same reaction as you at first. I thought, "What do I eat?" But, believe me, I'm eating. I'm maintaining my weight so I must be ingesting enough calories. If you ever make a decision to change your diet, I have a suggestion. Don't do it all at once. That would be overwhelming. Pick one food you would like to discontinue, and start by avoiding that. Substitute a better food for it so you are getting the calories you need. Don't eliminate all at once. It's too difficult.

I eat the following on a routine day (though I'm not saying this is what you should eat): The goal for me is not too much at one time, no milk, and relatively low carbs. I also need to ingest 1500mg of calcium and 3 fiber pills each day. I tend to stay away from fatty foods as this makes my GERD worse. (That's heartburn.) I eat at 6 9 noon 3 6 and 9. Eggos waffles in blueberry or strawberry - no syrup. leftovers of some sort or canned fish (tuna or salmon) with two slices of bread (without preservatives), a raw carrot. plain yogurt with blueberries and a banana put in it chicken and a starch (like brown rice) and a veggie (like spinach) frozen ice pop that I have made out of organic fruit juice such as cranberry or grape special-K or corn flakes with rice milk (I look for cereals with under 30mg of carbs/serving It's taken me years to come to the above and I've finally found the above formula helps me maintain my weight. Over the years, I would be putting on weight or losing weight. I think the key to maintaining weight for me is low on the sugar and fat. I also want to avoid big changes in blood sugar so I tend not to ingest simple carbs like sugar. Now, I'm not a nutritionist. So I do not know if I'm getting everything I need. But, I do take a multivitamin with lunch and two caltrate pills with meals. That's part of my calcium intake.

Sending good thoughts your way and wishing you a very successful outcome.

Welcome, Erin. There's much info on this forum and on the DINET board.

Thanks, Rita. What I really want right now is a pedal exerciser like you mentioned. I don't really have the room for a recumbent bike and I thought an exerciser like you described would work very well for me. I hope they are easy to find.

Hi everyone! For people who use an exercise bike, I know that when I'm vertical, I get symptomatic. Add to that, being vertical, and moving my legs up and and down (to pedal), and it's a recipe for blood pooling in my legs. That means I would get symptomatic even quicker by pedaling a stationary bike. What kind of pedaling do you do? Are you vertical? Are you recumbant? How is it going?

Thanks for the idea. I just tend to put sodium bicarbonate (baking soda) in water and drink it if I'm symptomatic. Did you get the licorice in pill form and then empty it into your drink?

I went through a bout of breathing normally (not feeling like glue or feeling any difficulty in breathing), but at the same time, feeling unsatisfied. I could still do all my normal activites while this was going on. I could be moving around or sitting still. I mentioned the above to my neuro at my last visit. It has since abated??? Hmmmmm. I have no clue.

Sky, The thought of prescription drug use allowing for the manifestation of POTS (in some people) was brought to my mind by another poster on this forum. The poster, (Ramakentesh, I think), mentioned research going on in Australia that has to do with hypermethylation of a gene promoter causing a deficit in the transporting of norepinephrine. Now, I don't know if I said all that correctly. But the point is, that in some cases, the "hypermethylation" could be caused by drugs (if I remember correctly). I remember an acne medication coming up in the discussion as one of them. Hence, I've come up with the idea that in some cases, the POTS might have been brought on by a combo of the person's genetic make-up and the use of a certain drug. Other than that, I know of no specifics to help you with.

Woththewords, I have an endocrinologist who has treated some of his POTS patients with a very low dose of hydrocortisone. 15 MG in the AM and another 5 MG at 1 PM. He said some two of the patients feel much better. He wasn't too concerned about long-term effects as he said that the body produces about this amount. I'm not sure, but I think I read somewhere that you could make your bones lose calcium by being on this hormone long-term. Anyway, I couldn't stay on this low dose as it made my GERD really bad and I was afraid of losing bone mass.

Ramakentesh, Do you realize that he was insinuating that YOU had been a drug user? Yikes!!! The only thing I could come up with is that I wouldn't be surprised if for some of us POTS has been brought on by prescription drug use.

Linda, I've been med free (for POTS) pretty much from the beginning. It was my choice since most of the meds I tried caused new symptoms. I "prefer" my known POTS symptoms. I don't like adding new symptoms to the mix of what I already cope with. So, over the years, I've developed my own ways of coping. This is not a perfect solution. But it is what I choose. My philosophy has always been, "I'm bad enough already. I don't want to take anything that makes me feel worse." So, how do I cope? Exercise a swig of 1/4 tsp of baking soda in water (salt) when feeling particularly low eating every three hours (and not overdoing sugary foods) trying to keep to a doable sleep schedule getting outdoors (especially with my husband) to get a change of scenery once a week (if possible) getting out for quick errands on a routine basis (if possible) pacing my activities so I can handle what I need to praying and reading my bible conversing on this forum getting a daily devotional from other chronically ill people from restministries.org taking a multivitamin avoiding foods with additives I'm sure I've forgotten some things. But some of the items I've learned on my own, and some I've learned from everyone else on this forum.

Etoly, Whether or not this video is what was seen, I viewed it and was very excited that POTS has gotten some press. The only thing I disagree with is how they mentioned that it is usually in young girls and that it usually resolves with time. That was the impression left anyway. It absolutely does NOT just affect young women. They should have mentioned that. And it may not resolve. I believe it would have been moe accurate to state these facts. In any event, I would love to see POTS get more and more "air" time so that more doctors and researchers would get interested in learning more.

I get this several times a night: I feel very warm,actually hot: I have a rapid heartrate. I end up throwing the covers off, changing positions and waiting for it to pass and then I fall back asleep. I don't know exactly what causes this, but my theory is that my blood pressure has probably fallen and my body is putting out adrenaline to bring it back up. I suspect the adrenaline is causing this "surge" to happen. I just figured it came with the territory of POTS.

Yep. I'm like that. On a rare occasion, when I've already eaten a good amount of protein, I may tolerate a bit of the sugar foods. I always keep in mind that I may have to pay the price.

I can empathize with you and I'm sending a rope down into your POTs hole to rescue you. I want you to realize that you are not the only one with struggles in every day life. This ailment is really tough. I kinda wish the Bill and Melinda Gates Foundation would take some of their money and give it to research into this dread disorder so they could help us lead a more normal life. I wish better days ahead for you and everyone on this forum. I think we are all heroes for coping with something so beyond our control.